what do you think?

[sue35]

Hmm..I can relate to this quite well!

My parents found out I had CF when I was 5 but they told everyone not to tell me. So I lived my happy little life only thinking I had asthma and that everyone who had asthma had to take medicine and get "poundings". I don't know when they were going to tell me because I found out by accident when I was 13.

In a way, I almost liked not knowing. I would never do that to my kids but my parents didn't know any better at the time. they didn't even think I would make it to 13. I could understand way back when not telling kids but now with the average age being so high I think you have to tell them.

I think as a little kid it did me no harm not to know, I was happier not knowing. I think I found out at an age when I could start being more responsible for my medicine so I needed to know.

 

[sue35]

Hmm..I can relate to this quite well!

My parents found out I had CF when I was 5 but they told everyone not to tell me. So I lived my happy little life only thinking I had asthma and that everyone who had asthma had to take medicine and get "poundings". I don't know when they were going to tell me because I found out by accident when I was 13.

In a way, I almost liked not knowing. I would never do that to my kids but my parents didn't know any better at the time. they didn't even think I would make it to 13. I could understand way back when not telling kids but now with the average age being so high I think you have to tell them.

I think as a little kid it did me no harm not to know, I was happier not knowing. I think I found out at an age when I could start being more responsible for my medicine so I needed to know.

 

[sue35]

Hmm..I can relate to this quite well!

My parents found out I had CF when I was 5 but they told everyone not to tell me. So I lived my happy little life only thinking I had asthma and that everyone who had asthma had to take medicine and get "poundings". I don't know when they were going to tell me because I found out by accident when I was 13.

In a way, I almost liked not knowing. I would never do that to my kids but my parents didn't know any better at the time. they didn't even think I would make it to 13. I could understand way back when not telling kids but now with the average age being so high I think you have to tell them.

I think as a little kid it did me no harm not to know, I was happier not knowing. I think I found out at an age when I could start being more responsible for my medicine so I needed to know.

 

[sue35]

Hmm..I can relate to this quite well!

My parents found out I had CF when I was 5 but they told everyone not to tell me. So I lived my happy little life only thinking I had asthma and that everyone who had asthma had to take medicine and get "poundings". I don't know when they were going to tell me because I found out by accident when I was 13.

In a way, I almost liked not knowing. I would never do that to my kids but my parents didn't know any better at the time. they didn't even think I would make it to 13. I could understand way back when not telling kids but now with the average age being so high I think you have to tell them.

I think as a little kid it did me no harm not to know, I was happier not knowing. I think I found out at an age when I could start being more responsible for my medicine so I needed to know.

 

[Debi]

I was a VERY late diagnosis (early 40's) because sweat tests always came back negative and it wasn't until they did a genetic blood test that the official cf mutations were identified. Fortunatley, mine are on the mild end of the spectrum. However, my whole life I had lots of pneumonia, coughed all the time, and was always on the regular routine of lung meds. Only thing I didn't take was Pulmozyme because insurance wouldn't cover it without an official cf diagnosis. I grew up knowing I had a serious lung condition, but other than believing I had to avoid getting sick and be extra conscientious about treatment when I did, I had no thoughts about dying younger. Without question, psychologically, it was a blessing for me to NOT know I had cf.

Having said that, physically it is better that I know, because I have access to Pulmozyme and a vest, which are so helpful. But psychologically, I believe it has been worse for me to have this diagnosis. At 54, I am now well aware of being way past the norm for life expectancy, so every day I have the thought that my days are really numbered. I hate that. I really do wish I could go back to the time when, as far as I knew, I would live into my 70's, although clearly with sicker lungs than the normal person. From a practical point of view, knowing means I have prepared the necessary papers and details for myself and my family. But I really liked living in a world where I didn't think there were any limits. I still try to live that way, but once you know, you can't ignore it.

You have to deal with the hand that you are dealt, and of course I would never want to intentionally live in the dark. It's not that I would ever want information hidden or lies to be told. It's just that for such a long, long time I was blessed with not knowing that my end would come sooner. Ignorance really was bliss. I do long for those "old" days. But I realize that's not the real world, and I realize that I am still blessed to have had so many years of relatively good health with my cf. Just the thoughts of a woman who has had a rather "abnormal" cf adventure!

 

[Debi]

I was a VERY late diagnosis (early 40's) because sweat tests always came back negative and it wasn't until they did a genetic blood test that the official cf mutations were identified. Fortunatley, mine are on the mild end of the spectrum. However, my whole life I had lots of pneumonia, coughed all the time, and was always on the regular routine of lung meds. Only thing I didn't take was Pulmozyme because insurance wouldn't cover it without an official cf diagnosis. I grew up knowing I had a serious lung condition, but other than believing I had to avoid getting sick and be extra conscientious about treatment when I did, I had no thoughts about dying younger. Without question, psychologically, it was a blessing for me to NOT know I had cf.

Having said that, physically it is better that I know, because I have access to Pulmozyme and a vest, which are so helpful. But psychologically, I believe it has been worse for me to have this diagnosis. At 54, I am now well aware of being way past the norm for life expectancy, so every day I have the thought that my days are really numbered. I hate that. I really do wish I could go back to the time when, as far as I knew, I would live into my 70's, although clearly with sicker lungs than the normal person. From a practical point of view, knowing means I have prepared the necessary papers and details for myself and my family. But I really liked living in a world where I didn't think there were any limits. I still try to live that way, but once you know, you can't ignore it.

You have to deal with the hand that you are dealt, and of course I would never want to intentionally live in the dark. It's not that I would ever want information hidden or lies to be told. It's just that for such a long, long time I was blessed with not knowing that my end would come sooner. Ignorance really was bliss. I do long for those "old" days. But I realize that's not the real world, and I realize that I am still blessed to have had so many years of relatively good health with my cf. Just the thoughts of a woman who has had a rather "abnormal" cf adventure!

 

[Debi]

I was a VERY late diagnosis (early 40's) because sweat tests always came back negative and it wasn't until they did a genetic blood test that the official cf mutations were identified. Fortunatley, mine are on the mild end of the spectrum. However, my whole life I had lots of pneumonia, coughed all the time, and was always on the regular routine of lung meds. Only thing I didn't take was Pulmozyme because insurance wouldn't cover it without an official cf diagnosis. I grew up knowing I had a serious lung condition, but other than believing I had to avoid getting sick and be extra conscientious about treatment when I did, I had no thoughts about dying younger. Without question, psychologically, it was a blessing for me to NOT know I had cf.

Having said that, physically it is better that I know, because I have access to Pulmozyme and a vest, which are so helpful. But psychologically, I believe it has been worse for me to have this diagnosis. At 54, I am now well aware of being way past the norm for life expectancy, so every day I have the thought that my days are really numbered. I hate that. I really do wish I could go back to the time when, as far as I knew, I would live into my 70's, although clearly with sicker lungs than the normal person. From a practical point of view, knowing means I have prepared the necessary papers and details for myself and my family. But I really liked living in a world where I didn't think there were any limits. I still try to live that way, but once you know, you can't ignore it.

You have to deal with the hand that you are dealt, and of course I would never want to intentionally live in the dark. It's not that I would ever want information hidden or lies to be told. It's just that for such a long, long time I was blessed with not knowing that my end would come sooner. Ignorance really was bliss. I do long for those "old" days. But I realize that's not the real world, and I realize that I am still blessed to have had so many years of relatively good health with my cf. Just the thoughts of a woman who has had a rather "abnormal" cf adventure!

 

[Scarlett81]

I don't think this theory is practical with cf-we can't go without our meds, obviously that is a life or death issue. Therefore you can't give a 5 yr old enymes and expect him to not realize all his other 5 yr old friends don't have to take them. To me personally, I think that sends a child the message that you are somehow ashamed of them or their illness. The parent may not be ashamed-but I'm just saying, thats how kids interpret things.

My mom (who was extremely far from perfect by the way) always told me about my illness and the consequences of not doing my treatments and taking my pills-but I was expected to do the same chores as my siblings and to play outside with the rest of them-cf wasn't a taboo subject. And I didn't grow up depressed of my illness b/c my mom never acted like I was dying. She was vigorous with my care, but never allowed me to use it as a excuse. It was just part of life. So I never blamed my problems on my illness.
That's just my personal experience.

 

[Scarlett81]

I don't think this theory is practical with cf-we can't go without our meds, obviously that is a life or death issue. Therefore you can't give a 5 yr old enymes and expect him to not realize all his other 5 yr old friends don't have to take them. To me personally, I think that sends a child the message that you are somehow ashamed of them or their illness. The parent may not be ashamed-but I'm just saying, thats how kids interpret things.

My mom (who was extremely far from perfect by the way) always told me about my illness and the consequences of not doing my treatments and taking my pills-but I was expected to do the same chores as my siblings and to play outside with the rest of them-cf wasn't a taboo subject. And I didn't grow up depressed of my illness b/c my mom never acted like I was dying. She was vigorous with my care, but never allowed me to use it as a excuse. It was just part of life. So I never blamed my problems on my illness.
That's just my personal experience.

 

[Scarlett81]

I don't think this theory is practical with cf-we can't go without our meds, obviously that is a life or death issue. Therefore you can't give a 5 yr old enymes and expect him to not realize all his other 5 yr old friends don't have to take them. To me personally, I think that sends a child the message that you are somehow ashamed of them or their illness. The parent may not be ashamed-but I'm just saying, thats how kids interpret things.

My mom (who was extremely far from perfect by the way) always told me about my illness and the consequences of not doing my treatments and taking my pills-but I was expected to do the same chores as my siblings and to play outside with the rest of them-cf wasn't a taboo subject. And I didn't grow up depressed of my illness b/c my mom never acted like I was dying. She was vigorous with my care, but never allowed me to use it as a excuse. It was just part of life. So I never blamed my problems on my illness.
That's just my personal experience.

 

[Allie]

Honesty is the best policy. I don't teach my child to lie or hide things from people, why would I do that to them? It hurts to find out, but you cope. And like Christian's family, you make it not a taboo subject. I STRONGLY feel that lying to, or hiding it from (which is a lie of omission) your child is wrong, wrong, wrong.

 

[Allie]

Honesty is the best policy. I don't teach my child to lie or hide things from people, why would I do that to them? It hurts to find out, but you cope. And like Christian's family, you make it not a taboo subject. I STRONGLY feel that lying to, or hiding it from (which is a lie of omission) your child is wrong, wrong, wrong.

 

[Allie]

Honesty is the best policy. I don't teach my child to lie or hide things from people, why would I do that to them? It hurts to find out, but you cope. And like Christian's family, you make it not a taboo subject. I STRONGLY feel that lying to, or hiding it from (which is a lie of omission) your child is wrong, wrong, wrong.

 

[Emily65Roses]

Know everything to control everything. One must make decisions about their own health care, even as a child, when it comes to something like CF. I am 100% with Allie on this one (among others, I'm sure... I didn't read it all).

 

[Emily65Roses]

Know everything to control everything. One must make decisions about their own health care, even as a child, when it comes to something like CF. I am 100% with Allie on this one (among others, I'm sure... I didn't read it all).

 

[Emily65Roses]

Know everything to control everything. One must make decisions about their own health care, even as a child, when it comes to something like CF. I am 100% with Allie on this one (among others, I'm sure... I didn't read it all).

 

[sue35]

I agree that you should tell kids but I don't agree with the whole parents ashamed thing. As I said my parents did not tell me and I didn't question why I took medicine and such as I thought it was for my asthma. I never thought my parents were ashamed of it when i did find out. so not all kids would think this

 

[sue35]

I agree that you should tell kids but I don't agree with the whole parents ashamed thing. As I said my parents did not tell me and I didn't question why I took medicine and such as I thought it was for my asthma. I never thought my parents were ashamed of it when i did find out. so not all kids would think this

 

[sue35]

I agree that you should tell kids but I don't agree with the whole parents ashamed thing. As I said my parents did not tell me and I didn't question why I took medicine and such as I thought it was for my asthma. I never thought my parents were ashamed of it when i did find out. so not all kids would think this

 

[Jade]

I think a person would get psychological symptoms due to fears regarding the <u>outcome</u> of the problem and not really the problem itself. What I mean is that we sometimes fear what <i>could</i> happen when were left uninformed. Fears are easily quelled when we know what were up against. I agree, tell'em as early as possible<img src="i/expressions/face-icon-small-cool.gif" border="0">